Amber Bobnar is the mother of an adorable little five-year-old boy, Ivan. Ivan attends the Early Learning Center at the Perkins School for the Blind and is completely blind. He also has a rare neurological condition called Joubert Syndrome that affects his muscle tone and balance as well as a seizure disorder and language processing disorder. Amber runs the website WonderBaby.org, a site designed to provide parents of children who are blind with information and support. She also has advice for teachers when working with parents of children who are blind.
As a parent, what do you think is important to remember about the communication between home and school?
Leaving your child in the care of a teacher can actually be kind of scary. Think about the beginning of a new school year: We've only barely met a new teacher and suddenly we're trusting them to care for our kids for six hours a day!
I think this kind of fear is normal and most of us do our best to just move past it, but parents of children with disabilities probably have to fight this even more. Our kids are vulnerable and often can't speak up for themselves. They can't be their own advocates, maybe can't even really express discontent or discomfort, so parents feel much more of a responsibility to take on these roles for their children.
As parents of children with disabilities, we need to be able to communicate with teachers to know exactly what's going on in the classroom, not only so we can feel confident that our child's needs and IEPs (Individualized Education Programs) are being met, but also so we can know that they are happy and well cared for.
What do you think teachers need to know about the parent's perspective when it comes to communication?
I think it's important for teachers to understand that as parents we may be feeling a lot of fear, anxiety, and even a bit of guilt. We may be afraid that our child won't receive the services outlined in their IEP; we might feel anxious that our child won't fit in with the rest of the class; and we may even feel a little guilty that we're having someone else take on their care for such a long period each day.
I think this guilt is even greater for parents of children who are incontinent, can't feed themselves, or haven't yet achieved other daily living skills. So much of their care is really parenting, or even mothering. A mother is supposed to change her son's diaper or wipe his face. Is it really OK that I'm letting someone else do this?
I actually know a mother who told her son's school, "If my child has a bowel movement at school you call me to clean it up. That's my job, not yours." I completely understand where she's coming from, but even if she lives right across the street from the school, this just isn't feasible. The teachers can't put their day on hold while they call the student's mother every time he has toileting needs!
Again, I think these kind of emotions are completely natural, but they can also be harmful to a productive school relationship. What school professionals need to realize is that what parents really want to hear is that you see our kids as important members of the classroom and that you will treat them with dignity and respect. I know this sounds so simple that it should be taken as a given, but it can make a huge difference in the relationship between the parents and the school.
My son's teachers do this remarkably well. They refer to him by his first name and have even come up with some loving nicknames for him (like "Mr Smiley Pants"). I've known other schools that refer to all their students in their communications to parents by their surname and this just feels too polished and cold. Ivan's teachers let me know what he has done during the day, such as PT or OT, but they'll also tell me about the things he found funny or exciting. I know they are relating to him on a personal level, that they get him, and this helps me to feel at ease with the school. I know I can trust them and it's so much easier to approach them about other issues.
The assistant director of Ivan's preschool program always starts back-to-school night the same way. She says, "Thank you for sharing your children with us." This always warms my heart. What she is saying is that she understands how hard it can be to hand your child over to a school and that she and her staff take this responsibility seriously. It feels really, really good to hear that said out loud.
When beginning a relationship with a new school or new teacher, what has helped you to facilitate communication between the school and home?
Ivan's school is really amazing at communicating with families. They consider themselves a "family-centered program" and it certainly shows. Here are a few of the things they do to help facilitate communication:
- When a new student enters the program the school works closely with teachers and therapists from their previous program to learn as much about the student as possible. Parents are encouraged to be present at every meeting about their child so the team can work together right from the beginning.
- Each student is assigned a binder that parents fill out at home and send to school with their child. The binder asks for basic information, like How did your child sleep last night?; Did he or she eat breakfast?; or Have there been any medication changes? This kind of information can really help teachers understand what's going on with their student and to plan accordingly. For example, if a child seems to have a hard time eating breakfast in the morning, they may fit an early snack into the schedule to help them get through to lunch.
- The binder also leaves extra space for parents to ask questions or share other pertinent information about their child. I like to use this space to share successes we've had at home so they can build on these milestones at school.
- When the binder comes home the teachers have written about Ivan's day. They let us know if he's napped and what he's eaten. This is a great way for us to keep track of his calorie intake and to plan for the afternoon. (Will he need to eat an extra snack? Should I expect him to nap?) Ivan's teachers also usually share something positive about his day and we use this as a way to talk to Ivan about his day at school.
- Each child is also assigned a communication switch, even if they are verbal. The teachers will record a short message on the switch describing something about the day's activities that the child can then share at home. For children working on alternative communication strategies, this can be a wonderful way to teach basic conversation skills. Ivan is non-verbal, but is doing really well with his switch!
- The school also hosts monthly parent observation days where parents are invited to come in and observe one half-hour session. We can use this time to see what's happening at the school and address any issues we may have.
- The program is also open to parents to come in at any time (with notice, of course) to observe their child or speak to their teachers. Parents are given phone numbers for all their teachers and therapists as well as email addresses. Email is such a convenient way to ask quick questions!
On the home end, what have you learned about communicating with the school that you think is important to share with other parents?
I can sum that up in one word: Boundaries!
This is your child and you have every right to know what's happening at school and to observe your child in the classroom, but the teachers also have the right to teach your child without interruptions. If you want to sit in on a class, you have to ask first and set up a time to do so… and you really shouldn't hang out for hours or days at a time. If you have a problem, you need to address it as soon as possible, but remember that your child's teacher has responsibilities to other students as well and needs the time and space to do their job.
I was on campus one day meeting with a social worker and found myself with about twenty minutes to fill before Ivan would be released from school. For some reason it made perfect sense to me to sit in the teacher's lounge and work on my computer while I waited for Ivan's day to end. As I sat there teachers and staff would wander in and look surprised to see me. I also realized that I could hear what was happening with other students in some of the classrooms downstairs. It suddenly occurred to me that maybe the teacher's lounge wasn't the best place for a parent to sit and work and that maybe there were privacy issues related to what I was overhearing downstairs. Maybe, just maybe, this wasn't the most appropriate place for me to be!
I brought it up with the assistant director the next day and apologized. We agreed that in the future the library would be a better place for me to work if necessary. This incident made me realize that just because my son goes to this school does not make this school my personal space. I need to respect the privacy of the teachers as well as the other students and remember that there are always boundaries.
Another important point for parents to remember is that they have a crucial role to play in their child's education and they can't expect teachers to do it all without any support. When the school organizes a parent night, meeting, or observation day, parents need to find a way to attend. We need to show the school that we are informed and engaged, not only so we can be involved, but also because it's supportive and respectful of the teachers and staff. We need to remember that teachers and therapists are well-trained and highly-qualified professionals, not glorified babysitters. They need our support as much as we need theirs.